Not diagnosed have many symptoms: Hi all, For... - Behçet's UK

Behçet's UK
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Not diagnosed have many symptoms

aaronmc
aaronmc

Hi all,

For the past 3 years ive had intermittent symptoms of Behcets, vision issues double vision etc, fatigue, joint pain, mouth ulcers often, achne like spots in weird placed like my forearms that leave a perm scar/mark, coming out in hives from having a simple plain water bath, I cant even use soaps anymore (that issue is only about a year old) and so on you get the picture. The GP's been very dismissive trying to treat stuff separately in the end ive been made to feel like a hypochondriac and no one has connected the dots. So for over a year ive just left it thinking its probably stress.

My wife has a GP friend who she happened to tell all of the symptoms to in one go who said its could be Behcet's, ive spent the weekend looking into it and its probably right.

I will visit the GP in the morning and present a list of symptoms again and have them go through my previous visits along with the new knowledge of the possibility of Behcets.

I am totally scared that i will lose my vision or worse but the treatments don't seem like a lot of fun.

Is anyone managing this with other methods such as Diet or even things like CBD oils proven to reduce inflammation in many autoimmune disorders?

Thanks all and ill let you know how i get on.

Aaron

5 Replies
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Hi aaronmc

Convincing doctors (GP) is possibly one of the hardest things most of us have experienced but even when they eventually send you to a specialist very few of them have an understanding of the condition.

Here's what I would suggest you do rather than keep talking through everything with them, gather a half page or less of brief descriptions of Behcet's and highlight every symptom you feel you are suffering with, present this to them and say you wish to be referred to a specialist, usually a rheumatologist, don't let them convince you otherwise and challenge anything they say, I even asked the GP I saw how many BD patients she had and the answer was none but because you've not got eye issues (I have now) then you cannot have Behcet's... really then please read this. Please please explain how this is making you feel and how scared you are about your eyes, I would suggest you go to an optician too and just tell them what you are experiencing with your eyes and you can also mention Behcet's, get them to look at your eyes, they have a basic understanding of the eye issues from Behcet's doing this will help you feel a little less scared and this could be helpful in moving you closer getting a referral depending on the outcome.

One of the biggest factors with the GP is genital ulcers, I have not read in your message this is something you suffer from, I kept quiet about mine for years because I had no idea this could be linked and even though I had appointments with the dental hospital, oral and maxillio facial, gynecology, ENT, rheumatology, neurologist, gastroenterologist everything was looked at separately, nobody put everything together I had to do this myself and then convince my GP that I wanted to see another specialist that turned out to be another rheumatologist and thankfully for me not the same one I had seen 12 months earlier who had not known why I got ulcers and said they naturally had nothing to do with the Elhers Danlos he'd just diagnosed me with! This in itself brought a whole new dimension to the individual conditions I had been suffering with, I can account for most of what I have now to either Behcet's or Elhers Danlos.

You must keep records and take pictures when possible it really really is important and helps especially when you have an appointment which always seems inevitably is the time you're feeling ok... had I not recorded everything, done so when I read this on this very forum, I'm not sure I would have been believed, being able to state the frequency of everything over a 4 month period before my appointment really helped.

One thing I did do almost immediately after being told I had Behcet's was to change my diet and I remove all refined carbohydrates out of my diet and this still remain the same other than the odd thing here and there when out at friends and family it's quite an easy way to eat, I'm not sure it's improved anything other than losing weight which is not a bad thing. Lot's of people do get some relief from extracting several food groups out of their diets whether it's sugars, spices or carbohydrates etc. The biggest thing is trying things and seeing how you feel afterwards.

For me my conditions seem to be worsening I am convinced that I have some low leven bacteria looming around my body which has started to erupt even more since I had my tonsils removed nearly 4 years ago everything is much more frequent.

Good luck with your appointment and let us know how you get on.

Gillian

Are you in the UK?

If so, you can ask to be referred to one of the CoE for Behcets near you.

I have just been referred to Liverpool and will be seeing them in July.

If it is affecting your vision, as it is with mine , you need to see someone sooner rather than later, unfortunately, if you go through the referral line in your local area it can take years being sent from one specialist to another , with many of them making off hand comments on Behcets without doing the tests until other things are ruled out, so getting to a CoE is a good plan to get sorting out a diagnosis one way or another done quicker.

Ask your doctor to refer you, it is centrally funded , so let the GP , it does not cost the practise anything to do it, all they need to do is add a letter explaining that you have many of the symptoms recurring that coincide with Behcets.

Keep a record of what is happening to you and any photos you can in the mean time, take this to GP and local appointments too so you don't forget any symptoms.

In the meantime, if you have a look at some of my previous replies , I have some diet things I do, some people cannot take salicylates , so look up those , food is very much trial and error. Rest when you need to , don't be guilty if you need to do less until you get help, exercise is good when you are not suffering too much, build up to an amount that you can cope with.

Go and see your dentist or hospital dentist, they need to be on board too, they can even refer you for help, but GPs often won't give you the help for the ulcers, claiming it is dental, so you can get prescriptions and advice from them about the best stuff for mouth ulcers.

Locally, ask for referral urgently to an opthalmologist , they need to check for any inflammation.

Hope that helps, please let us know how you are getting on, if you need more advice this site is great and you can get support and information from the Behcets Society and follow them on this site too, and if you want to keep in contact via chat I will be happy to hear from you.

Good luck.

where are you? i agree with the others, print literature of bd symptoms from abda and show them. There is no test for BD, its a you get tested for everything and nothing shows up sort of deal. The major symptoms are the oral and genital ulcers, and uveitis. I myself have never had the U, but I dont always get genital ulcers when I get oral. I used to get oral ulcers constantly....couldnt think of a time that I didnt have them to be honest.

regardless of what it is, or isnt, ive learned somethings that will help regardless of the issue:

1: drink water, only water and lots of it. aim for 100-150oz per day.

2.cut all sugar/ carbs for the time being. look into keto diet, antiflammatory diets, use those herbs. think meat, fat, veggies.

(im sure you have stomach issues, this will help)

3.get all the sleep. not sit on phone in bed, or watch tv. actual sleep. if you need 15 hours- so be it. your body needs rest.

4. find a doctor that listens, if not, find a new one... and be your best advocate. take photos, write down a timeline of symptoms...also...write down whats happening in your life when those symptoms happen. my ulcers ended up being dietary related as well as stress linked. during one of my biggest flares, we linked it to me overdoing it physically, and i was very mentally stressed out at the time too. ding ding ding- you know what i mean?

feel free to click on my profile for my many many other responses. good luck, and keep us posted! xoxo

Agree with blearyeyed, the centres of excellence (CoE) are centrally funded doesn’t cost the trust or practice anything. I emailed my local CoE & explained with photos of ulcers etc & they said ask your GP to refer to us. I printed that reply and gave to my GP who happened to have knowledge of Behçet’s as she’d trained at city hospital which is where CoE is based, so had seen Behçet’s before. Don’t let your GP be dismissive , if he or she is then report to your CCG /NHS trust as the Behçet’s CoE are asking GP’s to refer suspected cases to them. Better safe, especially with the ocular involvement. Take care 💙

Wow super response guys, Im in Bradford, West Yorkshire, the Dr I saw was from somewhere like Turkey or Iran looking at her and her surname so she was well aware of the disease (thankfully) but she refused to suggest it was that without tests. This was Monday I was told she would call me after speaking to the senior GP's about a range of tests to see which auto immune disease it could be, at least she agreed that my symptoms are worth looking at as a whole.

Ive never had genital ulcers (fingers crossed) but i have mouth ulcers often but they dont tend to last, I had them last week but they have already gone. My main symptom is vision issues, oral ulcers and fatigue.

Ive already started by cutting out refined sugars and reducing the carb intake, my symptoms have reduced this week and im feeling better but I was rushed to A&E monday with chest pains but I have a range of other underlying issues.

Stress! Well father of 3 and I work for myself, so not able to take a day off as theres no sick pay or anyone to do my work for me. Ive struggled financially for years and only just started to do well again so to take a break now feels like a real kick in the teeth. But I will try to destress as much as possible.

I'll keep everyone posted and thank you for the replies, so kind of you all!

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